Hi, all. A brief introduction.

[BleepingBeauty]

I just joined this forum and wanted to say hello.

I was diagnosed with severe complex OSA in November of 2007 and have been on CPAP for 15 months now. I've been compliant since day one. Lucky me, it didn't take long to get used to wearing a mask and using the machine. I simply told myself it was a must if I wanted my life back.

I feel like I sleep well, but I don't have a data-capable machine to verify that. What I do know for sure is that I'm not sleeping enough. I have no trouble falling asleep; just can't seem to stay asleep for more than 5-6 hours, when I feel like I need 7-8. So I still nod out occasionally during the day. But I don't fear falling asleep at the wheel, as I did before therapy began. So things are much improved, but I'm still searching for a consistent good night's sleep. (Aren't we all?)

I'm not happy with my DME, but I have no choice in the matter with my insurance. The RT there seems to be clueless, which is far from ideal when you're relying on this person for your treatment needs. From the research I've done and the questions I've asked elsewhere, there are apparently very few of us who are happy with our DME, so I guess I'm unfortunately in good company there.

Anyway, that's my story in a nutshell. I've listed my equipment and stats (which are subject to change, depending on the results from a recent sleep study). I'd like a data-capable machine so I can take my treatment into my own hands, but the DME is fighting me on it, and I can't afford to purchase one outright. Thus far, my sleep doc seems to think my therapy is working well enough. Well enough for him, perhaps; not well enough for me... And the beat goes on.

From the browsing I've done so far, this seems to be a very informative and friendly forum. It's nice to be here.

[LinkC]

Given that you posted at 2:48 AM, I can see the problem! lol Have you discussed your lack of sleep and daytime sleepiness with your doc; and (more importantly) told him of your dissatisfaction?

Maybe he needs to be gently reminded who the customer is here. If that little nudge fails, there ARE other doctors. I've found most are delighted to have patients take an active role in treatment. I don't understand those who don't. Just different personalities, I guess. (But sometimes I wonder if it's tied to competence level...just a thought.)

Anyway, welcome aboard! I like your nick. I already have a co-worker in mind to dub with that one! lol Boy, does it fit! (Her, of course...)

[Sleepy Boy]

Hi Bleep, and welcome. Lots of good people on here with lots of information.
Sleepy Boy...

[wasColette]

Welcome!

Keep us informed when you get your new sleep study results.

[Georgio]

Only sleeping for 5 or 6 hours for that length of time is not working. I would try to find either another sleep dr. or talk to my primary care dr. and obtain a new prescription for exactly the machine you want......then try to get your insurance to cover it on the basis that you failed with the machine you have. Maybe the results of your new sleep study will open the door for this opportunity. Be sure you obtain complete copies of all your sleep studies and prescription. Keeping an eye on your data only makes sense.

Welcome and good luck with your therapy.

Georgio

[BleepingBeauty]

Given that you posted at 2:48 AM, I can see the problem! lol Have you discussed your lack of sleep and daytime sleepiness with your doc; and (more importantly) told him of your dissatisfaction?

Maybe he needs to be gently reminded who the customer is here. If that little nudge fails, there ARE other doctors. I've found most are delighted to have patients take an active role in treatment. I don't understand those who don't. Just different personalities, I guess. (But sometimes I wonder if it's tied to competence level...just a thought.)

Anyway, welcome aboard! I like your nick. I already have a co-worker in mind to dub with that one! lol Boy, does it fit! (Her, of course...)

Well, it was 2:48 a.m. where you live! It was 11:48 p.m. here. I'm usually sleeping at that time, but on the days when I still nap, my bedtime gets pushed back a bit. It's a vicious cycle...

Yes, I've discussed my situation with my sleep doctor (who I'm told is brilliant, so I don't think it's a matter of incompetence). But I also don't think he's accustomed to a patient like me, who's done a bit of research on sleep apnea since I was diagnosed and is asking some pertinent questions. He also may be stretched a little too thin, as he's the medical director of a few different offices around the state.

During a sleep study last year with my nasal mask, the tech told me I was opening my mouth occasionally (negating the therapy, of course) and put a chinstrap on me. When I saw the doc for the results, he said nothing about the chinstrap. I questioned him about it at the end of our meeting, and he looked confused. Started thumbing through the file and, sure enough, found the tech's notation about the chinstrap. He then admonished someone in the office for not making sure the notation was easy to find. Not exactly a confidence-builder when you have to tell the doc what happened during the study - especially when it's something as important as the need for a chinstrap. If I hadn't asked about it, I would have gone through many more months of negated therapy.

I've been wearing a chinstrap since then, but I'm still not sleeping enough (or as well) as I need to. When I consulted with him about that several weeks ago, he suggested that I have another sleep study done. If the results show that I'm not experiencing many apneas, then he wants to put me on Provigil to keep me awake during the day. I balk at the suggestion, since I'm not a pill-taker by choice. He explains that, if my OSA went undiagnosed for years, I may have permanently damaged part of my brain, and the Provigil will make me feel more alert to compensate for that damage. He says Provigil has been on the market for several years now, with very few side effects, no addiction to worry about, it doesn't affect the dopamine levels, etc., etc. Two weeks later, a study is published saying Provigil is affecting the dopamine levels in the brain. (See http://www.webmd.com/brain/news/2009031 ... -addictive) Besides my aversion to taking any medication, I told him that, when I get a good night's sleep, I'm not tired during the day; if my brain had suffered that kind of permanent damage, wouldn't it not matter how much sleep I got at night?

So I had another sleep study done on March 23rd. I'm waiting on the results. I'm hoping he'll push for me to get a data-capable machine so I can monitor my own therapy and make adjustments as needed. But if he won't make the effort, there's one other sleep doctor in the area that I'll consult with. Otherwise, I'll be headed to Phoenix to find a good doctor there. Phoenix is a two-hour shlep for me, but I want to be sure I'm getting the therapy I need.

Anyway, thanks for the welcome. And glad you like my nick, which fits me very well. (The crankier I am from lack of sleep, the more likely I am to exhibit the potty mouth.)

[OutaSync]

If you were diagnosed with severe complex sleep apnea, you may be better off using a machine that is designed for that disorder. The machine that you are using is designed for straight OSA. Do you have a copy of your sleep study?

If your doctor thinks that you are fine and you know that you aren't, you need to find another doctor. One that knows how to treat complex sleep apnea.

Bev

[elader]

Your DME doesn't get to tell you anything. They are a supplier looking to make the most possible money. Your DOCTOR decides your machine. If he writes a script for a data capable machine, that's what you will get. If you tell him that you are waking up frequently, having issues with night sweat or feeling like you are suffocating and want to be able to capture this and he says NO... find another doctor or take the perscription and buy M series Pro at cpap.com

[BleepingBeauty]

Only sleeping for 5 or 6 hours for that length of time is not working. I would try to find either another sleep dr. or talk to my primary care dr. and obtain a new prescription for exactly the machine you want......then try to get your insurance to cover it on the basis that you failed with the machine you have. Maybe the results of your new sleep study will open the door for this opportunity. Be sure you obtain complete copies of all your sleep studies and prescription. Keeping an eye on your data only makes sense.

Welcome and good luck with your therapy.

Georgio

Hi, Georgio.

When I was first diagnosed and my primary care physician was writing the scrip for the machine based on my first sleep study results, he wrote the pressure requirement as 10-12 cm. The RT at my DME promptly called me and said, "I can't fill this scrip as it's written. It needs to be a specific pressure." The RT then called my PCP, who set the pressure at 12. For a year, I was at 12 cm; my sleep study last year reduced the pressure to 10. So I probably should have been at 10 all along. Needless to say, most PCPs are ignorant when it comes to OSA...

At my request, my sleep doc wrote me a scrip for a data-capable machine last year, but the DME basically laughed at me when I presented it to them. They said my insurance wouldn't cover it. I told them to submit the scrip, anyway, because I really don't care about the DME's bottom line or profit margin; I care about my health, and my doctor wants me to have a data-capable machine. (My DME's policy is to only loan these machines out occasionally so the doc can upload the data and see what's going on.) Whether they even submitted the scrip or not is unknown, but I never got an upgraded machine.

I called both the DME and my insurance provider not long ago, asking what was needed to provide me with a data-capable machine. The DME said I needed a letter of medical necessity from the sleep doctor (which I requested); the insurer said the doctor needed to request authorization from them. Dealing with these corporations is like dealing with the IRS; if you ask ten people the same question, you get ten different answers.

Thanks for your suggestions, Georgio. I'll keep pushing for the ability to monitor my own care and will let you all know how things progress from here. If the runaround continues, the bleeping will begin!

[JoyD.]

Georgio wrote:
Only sleeping for 5 or 6 hours for that length of time is not working. I would try to find either another sleep dr. or talk to my primary care dr. and obtain a new prescription for exactly the machine you want......then try to get your insurance to cover it on the basis that you failed with the machine you have. Maybe the results of your new sleep study will open the door for this opportunity. Be sure you obtain complete copies of all your sleep studies and prescription. Keeping an eye on your data only makes sense.

BB,
I think Georgio summarized it well . . . and as Elader said, the DME doesn't call the shots the doctor does! Your insurance goes by the same code whether it is a cheapie or a data-compatible machine so they don't care whether you have the Plus or the Pro or the Auto. Find a doctor who will give you a prescription for the specific machine that you want. You HAVE to be able to read your data to see what is going on and resolve it.

So you go girl . . . take the bull by the horns (no one else will). AND WELCOME! YOU'RE IN GOOD HANDS HERE!!

JOY

[LinkC]

And THAT's why, when the DME told me my 'script "wasn't specific enough" to get an auto, I called my Dr's office while she was on vacation and dictated my new 'script to the PA. They'll sign anything!

(I wonder if that's a felony?)

[BleepingBeauty]

If you were diagnosed with severe complex sleep apnea, you may be better off using a machine that is designed for that disorder. The machine that you are using is designed for straight OSA. Do you have a copy of your sleep study?

If your doctor thinks that you are fine and you know that you aren't, you need to find another doctor. One that knows how to treat complex sleep apnea.

Bev

Hi, Bev.

I agree, I need a more sophisticated machine. See my response to Georgio.

And yes, I have copies of my sleep studies. Re: my complex SA, here's an interesting anecdote: Last year, when I wasn't feeling rested, I made an appointment with my sleep doc's office. I saw his Nurse Practitioner. Told her I was still tired and didn't know why (this was before I had the sleep study that revealed my need for a chinstrap). She carefully reviewed my file, as she was puzzled by my continued sleepiness. She had an "a-ha!" moment when she saw my initial diagnosis, which included central apnea. "You don't just have OSA, you have central apnea, too." "Yes, I know." "You know? How do you know?" "Um, I read the report." "Do you know what central apnea is?" "Uh, yes. I did a lot of research when I got the sleep study results." I then proceeded to tell her what I already know, and she seemed astounded. Gold star on my forehead. (I guess sleep professionals are used to patients knowing nothing and being easily led.) No matter, though, as I'm still using the same machine, thanks to my DME's policy.

If my current sleep doc won't take further action to get me a data-capable machine, I'll definitely switch docs. We'll see what my latest sleep study reveals.

In the meantime, I appreciate the responses and advice I'm getting here. Thanks.

[jda1000]

I think DMEs, RTs, and doctors are like new shoes that never quite fit: change, and change again if you must. Everyone deserves comfortable shoes.

[OutaSync]

You may need more than just any data cpapable machine. Ask your doctor if you can try the machine that is made for treating complex sleep anpnea:

[/url]https://www.cpap.com/cpap-machine/bipap ... p.html[url]

"Complex Sleep Apnea occurs when a person is identified as having Obstructive Sleep Apnea but develops Central Sleep Apnea when using a CPAP machine. The cause of Complex Sleep Apnea is unknown at this time.

The Bipap Auto SV sleep therapy delivers optimal therapy for complicated sleep-disordered breathing patients utilizing a multilevel algorithm."

Bev

[BleepingBeauty]

You may need more than just any data cpapable machine. Ask your doctor if you can try the machine that is made for treating complex sleep anpnea:

[/url]https://www.cpap.com/cpap-machine/bipap ... p.html[url]

"Complex Sleep Apnea occurs when a person is identified as having Obstructive Sleep Apnea but develops Central Sleep Apnea when using a CPAP machine. The cause of Complex Sleep Apnea is unknown at this time.

The Bipap Auto SV sleep therapy delivers optimal therapy for complicated sleep-disordered breathing patients utilizing a multilevel algorithm."

Bev

Thanks for that info, Bev. I'll make note of it and question the doc when I see him for my study results.